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Just want to echo everyone else's "thanks"... I am really appreciative of your passion and energy for this cause.

I wonder what your thoughts are for the possibility of re-stenosis during pregnancy and in the postpartum period, especially since women often relapse post partum. After my 2nd was born, I had 4 relapses in the first year and at least 4 new lesions (the first ones, leading to the diagnosis). Being only 26 and hoping for more children (soon since "Time is brain") I am mentally trying to plan out when it would be ideal to schedule a procedure (assuming I have the luxury of being able to do so). Do you think it would be advisable for a woman who has recently had a baby to be re-examined for restenosis?

And how do the operation, dyes, and meds afterwards interact with breastfeeding? Could you please list the dyes and medications involved so I could look them up and see if they are contraindicated during breastfeeding?

Thanks again for your time and interest.

dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />

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Thank you Dr. Sclafani for taking the time to respond to us PwMS and for trying to continue with CCSVI procedures with IRB approval. I've posted only a few times but am here a lot of the time. Pieces of the jigsaw puzzle of my life are falling into place so I'm finally ready to speak up more.

Is there anything I (or we) can do to help you with the IRB process? Would letters of support from patients help convince the IRB that your work is very important and being conducted safely? If yes, who would I send the letter to?

I would like to know if vasodillators might be able to alter the effects of CCSVI to any worthwhile degree.

My body has become thoroughly addicted to Chilli, a vasodillator. A bottle of Frank's hot sauce lasts me 3 days and my local curry house doesn't have the ingredients to produce a curry that's hot enough. I am starting to feel a little abnormal : ( But I can't help but feel that perhaps my body knows what's good for it.

Just typing this is making me think about the kitchen where there's a new bottle of a Jamaican hot sauce. I tried a little on the way back from the supermarket and it's pretty good..

you sound like one hot tamale.

i do not think that vasodilation is going to help you one bit. But i am not a dietician, just a purveyor of ccsvi, trying to put things into the context of the zamboni concepts.

I did a search of chili and cerebral blood flow and only came up with a bunch of stuff on cerebral blood flow in llamas studied in Chile

ikulo wrote:Dr - I am curious about the IRB process. Is IRB approval required for non-research procedures? Why are angioplasty procedures being required to get IRB approval if they are not being done for research purposes or in a research setting? Or does an IRB have wide discretion in deciding what requires approval? Thanks for your time!

as i have tried to convey.an IRB oversees research in a hospital. Research is the study of things in a group where the individual is not the focus. I can liberate you, but i cannot treat you to see how patients with MS do with liberation. I do not need IRB to treat a patient with jugular vein stenosis secondary to catheter induced stenosis because that is an individual with a specific problem.
you unfortunately come to liberation as a group. while you have stenosis and can be treated for that stenosis as an individual, you do have MS and thus become a group with issues and a long history of placebo effects. unscrupulous individuals can take advantage of such situations. and that is wrong, even if you are willing to put your self on the line

dr zamboni suggests that all patients undergo liberation under the umbrella of IRBs. anyone who undergoes liberation outside of a trial has no say in the outcome of these trials and it will take longer to find out the true role of liberation in patients with MS.

i think the problem has been that neurologists have made decisions outside of trial and that has infuriated and moblized you all to the detriment of the science.

hopeful2 wrote:Thank you Dr. Sclafani for taking the time to respond to us PwMS and for trying to continue with CCSVI procedures with IRB approval. I've posted only a few times but am here a lot of the time. Pieces of the jigsaw puzzle of my life are falling into place so I'm finally ready to speak up more.

Is there anything I (or we) can do to help you with the IRB process? Would letters of support from patients help convince the IRB that your work is very important and being conducted safely? If yes, who would I send the letter to?

Patrice (hoping for liberation someday)

i have no idea whether the IRB would look favorably or unfavorably on this action, but i say let's go for it. afterall, the IRB is here to protect the investigation subjects. Hearing from the subjects seems like an reasonable thing to do and we certianly do interesting things around here , dont we?

MS_mama wrote:Just want to echo everyone else's "thanks"... I am really appreciative of your passion and energy for this cause.

I wonder what your thoughts are for the possibility of re-stenosis during pregnancy and in the postpartum period, especially since women often relapse post partum. After my 2nd was born, I had 4 relapses in the first year and at least 4 new lesions (the first ones, leading to the diagnosis). Being only 26 and hoping for more children (soon since "Time is brain") I am mentally trying to plan out when it would be ideal to schedule a procedure (assuming I have the luxury of being able to do so). Do you think it would be advisable for a woman who has recently had a baby to be re-examined for restenosis?

And how do the operation, dyes, and meds afterwards interact with breastfeeding? Could you please list the dyes and medications involved so I could look them up and see if they are contraindicated during breastfeeding?

with respect to when to do a liberation, it would approriate within the first two weeks of having menstrual period or after a negative pregnancy test. We use xray dye, aka contrast media and anticoagulation for the procedure. the contrast media I use is called visipaque, a noninoinc iso-osmolar agent. I believe that it is safe in young children especially if ingested rather than injected. mothers milk would lead to ingestion.

So i guess that the time to have a liberation is AFTER delivering a baby.

Thanks again for your time and interest.

i wish my trainees were as curious as you are.

Liberation would be contraindicated during pregnancy and that is part of my IRB proposal. Why? Because any radiation during pregnancy is a risk. While we would take that risk sometimes if you had some lifethreatening condition while pregnant because the fetus relies on the life of the mother.

But irradiation in someone who is not immeidatley life threatened is not appropriate, especially if the radiation were given for something as new and unclear as liberation.

Dr Sclafani read your response to guy with purple feet and the gentleman who adores chiles(as a vasodialotor).. Ok I was your 10th librtation I think with the cutting balloon. I still have purple feet. But Iwill 100% tell you that niacin will alleveate those purple feet as well as large percentage of the tightness (spasticity) for aprox 1/2 an hour to an hour. A small amount of alcohol in the evening works as well. Neither is solution as they don't last but they deffinately ammeliorate the condition temporarily as vasodialators.
Ok since operation the urge to urinate has 100% disappeared I never wake up because I have to pee anymore. Also the forgetfulness I was starting to develop has disappeared and my brain in slowly returning to it"s original steel honed edge. In regards to exercise the gentleman is 100% correct in that movement (ie walking exercise) gets rid of purple feet at least temporarily too. Which is why it is soo important to get physical therapy after operation and get muscle strength up get blood flowing. It has been a total nightmare getting a damn pT script from the state insurrance physicans as they want you to write it and you don't feel comfortable doing it. So I am going to pay a pay for service doc $250 not under insurrance to write me a script for physical therapy. Eventually this should be part of the whole program. So little improvements all the time and I am walking more with out touching walls or holding on. Still think more to come. You are a super human being! Barbara

costumenastional wrote:Doctor Sclafani, maybe you remember that a doppler that i have had recently showed serious blood flow issues in both my jugs. I am to visit Professor Grozdinski soon for possible treatment.

I watched Zamboni's views about stents the other day and i am very sceptical.You see, Grozdinski is stenting big time. I know that you have already replied about this many times but here goes:

Angioplasty is well known not to have long terms efficacy and i believe this is why some docs go the other way.

Is really stenting veins that dangerous? For my understanding is that once the device becomes one with the vein's wall after a couple of months it s safe.I am sick and tired of all this terrorism.

my experience with venous stents is mostly as they relate to treatment of stenosis of veins used in hemodialysis. Indeed that it by far the most common indication for venous stenting. This is not quite equivalent to venous stenoses in jugular veins that have outflow problems with valves and hypoplasias.

With stents in dialysis patients come some long term(,stenosis of the setnt occlusion of the stent and fracture of the stent)and short term problems. (migration, infection, thrombosis)

Migration occurs because veins get larger as they get closer to the heart. This is in the same direction as flow. Thus flow pushes the stent toward a larger blood vessel rather than toward a smaller blood vessel as occurs with stents in arteries. The way we reduce this risk is to oversize the stents. So, if a blood vessel has a diameter of or 6 millimeters, we would oversize the stent by about 20%. That gives us a diameter of around 8mm. But the jugular vein can distend by as much as 100% or more. So putting a 10 mm stent might be adequate.
infection is certainly not a common problem
thrombosis occurs when the stent clots off. Clot can form when there is turbulent flow, slow flow or foreign body. A stent is a foreign body until it is incorporated into the wall when the lining cells of the blood vessel grow over it. That is why antiplatelet drugs like plavix (clopridogrel) and anticoagulants like heparin, are given for a few months.
stenosis of stents occurs because of turbulence at the stent vein junctions or because of a increase in cells (hyperplasia) caused by stimulation by the stent. This can lead to stenosis. Those stenoses can be harder to treat. They can also lead to long term thrombosis.
Finally stent fracture can occur because of motion of the neck leads to stress on the metal struts of the stent. This depends upon the degree of motion and the degree of flexibility of the stent.

So now that I have terrorized you, let me give you my opinion about stents again. Primary stenting means that you start by stenting at the time of dilatation. That means that those patients who would have done well without them have had them placed for no reason. Those patients now have a lifelong risk of intimal hyperplasia, thrombosis and stent fracture that might be difficult to treat in the long run. This in addiiton to the risk of migration, acute failure and the risks of long term anticoagulation.

Of course, if dr Zamboni's data (50% restenosis) is not better than others will report, for example reports of restenosis is 90%, then something better needs be done. and stents might be the answer.

the real issue iss the anticipated long time of survival of patients with ms who are treated by liberation. Too long for less than desirable stents currently on the market. New stents designed for the jugular veins, including stents that flare out or have anchoring hooks to reduce risk of migration, drug eluding stents that reduce hyperplasia, covered stents, etc will be developed if liberation is proven to be the standard of care of the future. The companies will build if you will come

that is why i do not want to stent now. I prefer to wait for more data and better devices.

jak7ham9 wrote:Ok since operation the urge to urinate has 100% disappeared I never wake up because I have to pee anymore. Also the forgetfulness I was starting to develop has disappeared and my brain in slowly returning to it"s original steel honed edge. In regards to exercise the gentleman is 100% correct in that movement (ie walking exercise) gets rid of purple feet at least temporarily too. Which is why it is soo important to get physical therapy after operation and get muscle strength up get blood flowing. It has been a total nightmare getting a damn pT script from the state insurrance physicans as they want you to write it and you don't feel comfortable doing it. So I am going to pay a pay for service doc $250 not under insurrance to write me a script for physical therapy. Eventually this should be part of the whole program. So little improvements all the time and I am walking more with out touching walls or holding on. Still think more to come. You are a super human being! Barbara

barbara
this is great news! about your improvements. Unfortunately i cannot use your results in any reports of my treatments because we were not in irb

i am sorry about the PT thing. I will just have to get some education about PT so that I can interact with therapists, this is not something IRs have done in the past but IRs just keep getting more involved in things they didnt expect to when they started training

Thanks a lot for this answer to costumenastional Dr Sclafani. I would understand stent removal would be difficult if not impossible (guess cannot be done without a major intervention?) so waiting for new vein stent techniques could be worthwile on case by case basis...

which does in my view not necessarily mean that stents that have already been applied in CCSVI procedures would not be appropriate though...(not to terrorize the pioneer patients...)...at least from those patients we've heard which underwent treatment by a trained specialist they had no problems so far. The one case in Stanford understand was an exceptional and very specific problem and is over and over again mentioned by the media...OK understand raised for obvious potential safety concern reasons which of course need to be taken into account...

I searched this thread but can't find it, but what about the phenomenon of 'purple feet', I had angio and within an hour my purple foot (of two years) was cleared up. The angio cleared up the jugular, which leads right to the heart, how does it effect the feet?

Dear Dr. Sclafani, The vascular surgeon called it exactly a long standing thrombosis of the left internal jugular vein. Something we expected because of the MS. He tried a recanalisation. This was not succesfull. Are there other possible treatments for liberation if setting a balloon or stent are not possible?

i would have to see the imaging at the least to make an intelligent answer.

were there no other lesions?

Dear Dr. Sclafani,

According to Dr. Torsello there were no other lesions.

In the April 14th presentation of the MS Society on CCSVI Dr. Zamboni said something of great interest for us, regarding the completely blocked i jugular vein.

He said nr. 1 treatment agioplasty, nr 2 treatment angioplasty and when necessary open surgery, bur only on the jugular veins. He called this open surgery on the jugular veins a safe option.

My question is: Should this be a safe option for a completely blocked vein which could not be treated by angioplasy?

And is there already experience with this option, and do you consider this save too.At least for me this remark of Dr. Zamboni wasa the first time this option was mentioned.

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